Gov. Gavin Newsom signed the bill (SB 1099) on Wednesday in the wake of a decade-long CBS News California investigation into the state’s neonatal genetic biobank.
Although we don’t yet know who is using your DNA for research or what the research is being done for, the California Department of Public Health will now be able to collect newborn DNA stored by the state of California. The number of samples and the number of DNA samples the state has on file must be disclosed. We sell it to researchers every year.
California has kept bloodstains of every baby born in the state since the 1980s. Researchers and law enforcement may use these DNA samples without your knowledge or consent.
If you’re related to someone born in California after 1983, some of your DNA may be in the state’s large neonatal genetic biobank. In response to our decade-long investigation, lawmakers this year introduced several bills aimed at uncovering how the state accumulates and utilizes California’s newborn DNA stockpile. Submitted.
SB 1099 was the only bill to survive Congress.
While privacy advocates say this is a step in the right direction, the latest amendments raise new questions about what state secrets look like.
The original bill was significantly amended to remove requirements for the state to disclose which researchers are purchasing DNA and what they are using it for.
Privacy advocates plan to try again next year.
Read our continued coverage of newborn blood spot privacy concerns here.
Learn more about newborn bloodstain storage and how to opt out of storage and research.
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